It was 6 years ago on January 30th that Maggie was diagnosed with Autism. From that day forward, life was a whirl of navigating the system, making appointments and getting on endless waitlists. I was working full-time while the kids were in daycare. At the beginning there weren’t actually that many appointments to attend, because she either didn’t qualify for services or the waitlist was 3 years long. That’s not an exaggeration by the way. My “free time” was taken up with mountains of paperwork, phone calls, and parent-training classes.
I remember being overwhelmed, but also just wanting help. No more waiting lists. We had 2 private therapists working with Maggie while we waited.
Just as we were beginning to feel like we could breathe again, the new teacher at the daycare dropped a bomb on us when she said that Molly wasn’t doing anything at daycare. She and Maggie’s therapist were worried that Molly might be autistic as well.
This meant so many more appointments, in a much longer process than I ever imagined, because I felt like they were just wrong, and that it wouldn’t take long to prove that. It’s been 5 and a half years and we are still trying to answer that question.
There were days that I needed a minute-by-minute schedule of how I could get the kids to the appointments they needed to be at. I would be swapping kids out at the daycare, hiding behind cubbies in the hope that the other kids didn’t see me and get upset that it wasn’t time for them to come home yet. And I was in constant fear that I was going to drop a ball. I worked at night or in waiting rooms to make up the time. I had to make this work because these appointments were going to fix everything. Appointments meant hope. I couldn’t drop a ball.
Eventually we decided that I needed to be home because there weren’t enough hours in the day. I could breathe again. The kids were in school by now, and daytime appointments were going down. Eventually they almost stopped. I started to feel silly when people asked me what I did all day, because I was realizing that I wasn’t running to appointments. I began to think about returning to work, but still had some details to work out such as before and after care.
It’s a good thing that I don’t make decisions quickly, because here I find myself deep in the thick of appointments again. We’re getting help for both girls from a few different programs, as well as monthly trips to the pediatrician while we try to solve the medication mystery.
There are logs to fill out, questions to answer, activities to make, meetings to have, and more phone calls. All of it is meant to be helpful. Some of it is. Some of it feels like a make-work project in guilt.
Yes I realize that it sounds stupid to say that I couldn’t find the time to check some boxes. But it’s more than checking boxes. It’s one more acknowledgement that things aren’t working. That everything is getting worse instead of better. It’s one more checkmark that other parents don’t need to make.
I find myself wanting to cancel everything and unplug the phone. I’m not sure if that’s stupid or brave. Stupid to turn down help that could make things a little bit better and help my child and my family? Or brave because turning help away that is causing more stress is the unpopular decision?
I just want my daughter to stop feeling sad and angry. And I want the rest of us to stop feeling like we need to walk on eggshells all the time. I want the next appointment to come with a magic wand. I want a fairy godmother. What’s the intake number for that program?